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Monday, 18 November 2013

First cousin marriages in Muslim communities are putting hundreds of children at risk

The man wept as he told how his beautiful, dark-eyed child died in a hospital cot with medical tubes snaking from his frail body as nurses fought unsuccessfully to save him. Sick with pneumonia, the two-year-old gave up the battle for life.

A rare tragedy, you might think, in modern Britain, with all the advances of medical science.

But in the terraced streets of Bradford, Yorkshire, a child’s death is anything but rare. At the boy’s inquest, coroner Mark Hinchliffe said Hamza Rehman had died because his Pakistan-born parents (shopkeeper Abdul and housewife Rozina) are first cousins.

Four years before, Hamza’s older sister, three-month-old Khadeja, had died of the same brain disorder which causes fits, sickness and chest infections. The couple had another baby born with equally devastating neurological problems.

A heartbroken Mr Rehman told the inquest that he and his wife were unsure whether to have any more children. The coroner expressed deep sympathy before saying that Hamza’s death should serve as a warning to others.

He said: ‘This highlights a cultural and religious issue relating to first-cousin marriages and the potential risk to children that some medical experts say can result from such unions.’

The coroner chose his words carefully, since he was addressing one of the most controversial — and taboo — subjects in multi-cultural Britain: marriage between cousins in the Muslim communities which has left hundreds, if not thousands, of children damaged or dead.

This week, leading geneticist Professor Steve Jones, of University College London, warned that ‘inbreeding’ in Islamic communities was threatening the health of generations of children.

He said: ‘We should be concerned as there can be a lot of hidden genetic damage and children are much more likely to get two copies of a damaged gene.’

He highlighted Bradford as a city that was ‘very inbred’.

This is not the first time the distressing issue has been raised. Ann Cryer, the Labour MP for nearby Keighley, has said that cousin marriages are medieval, harm children and are arranged in order to keep wealth and property within families.

‘It is not fair to the children or to the NHS which has to treat them. If you go into a paediatric ward in Bradford or Keighley, you will find more than half the kids are from the Asian community,’ she said.

Since Asians form only 20 to 30 per cent of the population, that figure is clearly disproportionate.

Mrs Cryer recalled the case of a young girl in hospital who had to carry an oxygen tank on her back and breathe from a hole in the front of her neck.

‘Her parents were warned by doctors not to have more children,’ she explained.

‘But when the husband returned again from Pakistan, his wife had given birth within months to another child with exactly the same condition.’

Are the MP’s words, and those of Professor Jones, inflammatory or simply a truth that needs to be aired?

Sadly, the facts speak for themselves. British Pakistanis, half of whom marry a first cousin (a figure that is universally agreed), are 13 times more likely to produce children with genetic disorders than the general population, according to Government-sponsored research.

One in ten children from these cousin marriages either dies in infancy or develops a serious life-threatening disability.

While British Pakistanis account for three per cent of the births in this country, they are responsible for 33 per cent of the 15,000 to 20,000 children born each year with genetic defects.

The vast majority of problems are caused by recessive gene disorders, according to London’s Genetic Interest Group, which advises affected families.

Everyone carries some abnormal genes, but most people don’t have a defect because the normal gene overrules the abnormal one.

But if a husband and wife both have an abnormal recessive gene, they have a one in four chance of producing a child with defects.

These include blindness, deafness, blood ailments such as sickle cell anaemia, heart or kidney failure, lung or liver problems and myriad complex neurological or brain disorders.

Even their healthy children have a one in four chance of being a carrier of a defect, with terrible implications for the next generation.

The problem is most serious in Bradford. A recent survey of 1,100 pregnant women in the city showed that 70 per cent have husbands who are first cousins — a higher percentage than the average of 50 per cent among Pakistanis across the whole of Britain.

It is no surprise therefore that more than six per cent of children in Bradford have health defects, with paediatric wards looking after countless children, including teenagers lying in nappies who are unable to speak and are fed through a tube.

Meanwhile, the city’s special schools struggle to cope with huge numbers of pupils with learning difficulties.

Bradford’s St Luke’s Hospital has seen an extraordinary rise in the number of different types of genetic disorders. Some are very rare and, hitherto, unknown in Britain.

In a typical health authority area, the range of different types of genetic disorder total 25 a year. But in Bradford, 140 have been diagnosed, according to Dr Peter Corry, a consultant paediatrician at the hospital.

Many are degenerative ailments which lead to a decline in the ability of the brain and spinal cord to function properly after a child is born, as in the case of Hamza and Khadeja. Their bodies weakened, and unable to fight off infections, they gradually faded away.

The British Paediatric Surveillance Unit says eight per cent of all UK children born with this kind of neuro-degenerative condition come from Bradford, although the city has just one per cent of the UK’s population.

Research into the city’s 9,000 disabled youngsters also revealed a ‘disproportionately high’ level of hearing and sight problems in Pakistani families.

But Bradford is not alone. In Birmingham, which also has a big Pakistani community, the city’s Primary Care Trust estimates that one in ten of all children born to first cousins either dies in infancy or goes on to have a serious disability because of a recessive gene disorder.

Yet cousin marriages — and the resulting consequences — remain a taboo subject. Few of the affected families will discuss the issue publicly.

Many NHS doctors, while admitting privately there is a crisis, refuse to speak out for fear of being branded ‘racist’.

However, on Muslim websites the issue is discussed more freely. An Asian health worker wrote recently: ‘I went to two special schools in my city. One was for children with physical disabilities; the other with kids who had learning difficulties.

‘The children at the second school were aged 13 to 19. None of them was capable of functioning beyond the behaviour expected of an infant. They all wore nappies.

‘They didn’t speak, a few grunts aside. All needed inordinate amounts of special care, from doctors, speech therapists and so on. The parents are drained emotionally.

‘Of the six 16-year-olds at the second school, five were Pakistani and one was a Tamil. All had blood-related ancestry. I rest my case: cousin marriages don’t work.’

So why are cousin marriages so popular?

As one British-Pakistani put it bluntly on a similar website: ‘A main reason why this corrupt practice is still followed in Britain is because the family wants to keep their property, land, jewellery and money in the family.

‘The lack of education in families, along with a Pakistani village culture, encourages these incestuous marriages. The children are born disabled and it must cost the NHS millions of pounds to treat them. Maybe if the NHS refused to treat the children the families would have second thoughts.’

They were harsh words. But this week I was told by charity workers, doctors and counsellors working with families in Yorkshire, Lancashire and the Midlands that many parents also believe it is an ‘act of God’ or the ‘will of Allah’ that their children are born disabled.

According to Zed Ali, manager of a Lancashire charity, Project BME (Black Minority Ethnics), some parents think that if their children die, they will become angels in heaven.

‘It is hard to counter these religious views without offending the Pakistani community,’ she says.

Zed, who has what she calls dual-heritage Asian and British background, was a social worker in Burnley, Lancashire, before founding Project BME.

She said: ‘In Burnley, I saw a huge number of children from cousin marriages with learning disabilities. It was often not just one child, but two or three in one family.

‘When it comes to cousin marriages, the boy and girl often have no choice.

‘Their families don’t take their happiness into account. Marriage is arranged by the parents or grandparents, who are also often related to each other.

'A girl will be told she is marrying her cousin when she is 14, 15 or 16. They catch them young before they are old enough to break away from the family. The girls are frightened of being ostracised if they don’t do it. A male cousin is chosen in Pakistan to marry them.

‘It is cruel because of the possible consequences. Arranged marriages can work, but they can be a form of abuse to both sexes.’

In Bradford, Dr Peter Corry says he knows of one family with six children all with the same genetic neurological disorder, which means none of them will survive to adulthood.

A Muslim doctor trying to tackle the problem is Mohamed Walji, who runs a health centre in Balsall Heath, Birmingham.

‘The huge number of applications for child disability allowances in our multicultural cities and towns shows the reality,’ he explains.

‘We all carry mutations in our genome [the genetic blueprint for our body] — half of which comes from our father and half from our mother. But the chances of carrying the same mutations is higher in first cousins and those marrying within very close-knit communities.

‘If they both carry the same mutations, there is a one-in-four chance of having an affected child — which can result in anything from a mild disability to a catastrophic illness or a miscarriage.’

Dr Walji says the consequences are devastating — not only to the sick child, but also to siblings, parents and the extended family.

There are endless hospital visits and one of the parents has to become a full-time carer. At worst, there is the trauma of watching a child die or suffer from a long-term illness with no cure.

Dr Walji has discussed how cousin marriages were damaging local families with the imam in his local mosque, who has since given lectures about the dangers of such unions to children.

‘It has had quite an impact,’ says Dr Walji, proudly. ‘It has led to fewer cousin marriages.’

Yet you only have to read the internet messages on Muslim medical forums to understand the scale of this tragedy.

One young mother, calling herself by the Pakistani name of Shenzah, wrote recently: ‘I have a huge difficulty. I am married to a first cousin. My parents and my husband’s parents were also married to their first cousins.

‘Now I have one daughter with lots of defects and the doctor is sure it is due to these marriages.

‘I was against marrying a first cousin because I believed it would cause genetic problems, but my family forced me. According to them, what the doctors say is all nonsense.

‘I cannot understand why cousin marriages are not forbidden in Islam. The Koran doesn’t forbid it and this encourages people around me to disbelieve what the doctors say.

‘My daughter is not going to survive for long and the doctors are unable to find out what she is suffering from.

‘They are sure if I get pregnant again, the risk for the next baby will be the same.’

She said she had two options: ‘One is to give up the idea of having any children, ever. The other is to get a divorce. Please, can anyone tell me what to do?’

These are despairing words which will bring little comfort to so many families across Britain who, like Abdul and Rozina Rehman, grieve the loss of their precious children.